Patient Testimonies | May 14, 2025
Hello, we are Diane and Nicholas Basil from Ellenton, Florida and a retired couple in our 70s. Nicholas was diagnosed with multiple sclerosis in his 30s and has been living with the condition ever since, with a range of experience in various medications with high costs.
For over a decade, Nicholas was on the medication Gilenya made by Novartis whose list price is over $11, 000 a bottle. In 2022, both of us retired and around the same time, Nicholas’s longtime doctor moved states, making us switch to another doctor that would switch up his MS medication to Vumerity manufactured by Biogen. This is when the entire situation began. As we both were placed on limited incomes, Vumerity brought us a $1,949.93 monthly copay, not counting all the other medications we were on. It just was not financially doable.
We were fortunate enough to receive financial assistance from the PAN Foundation in the form of a grant to help pay for Vumerity but due to changes in health insurance billing and coverage of the medication, we have been billed for differences in coverage of the medications that cost $9056.37 list price. Due to the high cost charge differences and bills, between our insurance and Medicare Part D, Nicholas has not been able to get Vumerity and has seen his health decline.
As a retired nurse, I just can’t let this happen but the entire situation has consumed my life, from looking for other grants, reaching out to organizations, and calling our insurance plan to dispute the coverage. However, Nicholas has insisted I stop letting this issue consume me and has decided to not take Vumerity if we cannot afford it and move on with life, but we or anyone else should not be in this difficult situation as American citizens who worked hard all their lives.
We hope that the Medicare Negotiation Program will continue to lower the costs of selected medications, and hopefully include MS drugs in the negotiation process. We need lower cost drugs now.